Share your story
Everyone with a bladder or bowel control problem will have a different story to tell and by sharing your own individual experience you can offer hope and inspiration to others in a similar situation. Being able to identify with someone and make a connection can be the first step towards an eventual recovery – your story could help change someone’s life.
Please contact us to find out how you can share your story and how this could help raise awareness.
By working together we can help people understand more about these problems, the challenges faced and how and where to access health professional support.
You can read some of our current stories below.
Our Patient Stories Section has been developed with the help of an unrestricted educational grant from Medtronic.
I am a 39 year old male from Stratford upon Avon and am at the present time a full time carer for my wife who is disabled.
My bladder problems started a few years after I underwent a back operation in 2006 to correct the loss of sensation in my legs. My waterworks started to fail until the point in 2010 when I went in to complete retention. As a result I was introduced to Intermittent Self Catheterisation.
After a short while this amazing technique for emptying the bladder became a wonderful method for me and now the catheter is my best friend. It’s a very positive feeling knowing that where ever you may go you will always have a means to empty your bladder.
At first, the idea of intermittent self-catheterisation frightened me; but I couldn’t have been more wrong. The very best piece of advice I can give to anyone new to this procedure is to relax and do not worry, you will see that in a few weeks you will find this technique a doddle.
“As a child I experienced bedwetting, urinary tract infections, loss of control of the bladder and a leaking bowel, with no sensation of fullness or urge. I never saw a doctor regarding these conditions, my family self-diagnosed the problem as laziness. This of course added up to a very unhappy childhood.
1974 was the first time I saw a doctor regarding my condition after giving birth to my third child. The diagnosis was a severe prolapse of bladder, bowel and vagina, so a hysterectomy and bladder repair was carried out. This proved to be a failure, as the infections continued together with the leaking bowel. In 1980 I had colposuspension surgery, which worked for a few years, but the UTIs and the bowel leakage continued. In 1986 I had further surgery for pelvic floor, bowel and vagina reconstruction, but this again left me with UTIs and a leaking bowel, plus now I had to self-catheterise 6 times a day. I was prescribed long term antibiotics and incontinence pads.
After a few years the bladder incontinence got a lot worse, and the UTIs were out of control as the antibiotics were not working. Trying to hold my life together was proving very difficult. Work, family life and travel were all very stressful. At this point I was under three local hospitals, none of whom could sort out the UTIs and all my GP could offer me was antidepressants! So in 2000, in desperation I found out who the top doctor in the country for UTIs was, and made an appointment to see him. At last there was hope. He was horrified by the treatment I had received or should I say lack of it. I should have been receiving regular cystoscopies and biopsies etc. I was hospitalised and diagnosed with Cystitis Cystica, Diverticulitis, and chronic urge incontinence with no sensation of urge or fullness. I was put on an antibiotic drip, and long-term antibiotics, which did the trick, but still the bladder & bowel incontinence remained.
I now self-manage my symptoms. I found that by massaging my bladder with my fist I could start the emptying of my bladder just as well as I could self-catheterising. I keep everything ticking with the help of antibiotics, steroids, incontinence pads, medical wipes, Movicol, glycerine suppositories, and Peristeen (bowel irrigation).
Even with all these problems I have always pushed myself to lead a full and rewarding life and even embarked on a 200-mile charity coast to coast bike ride at the age of 65 for our local Hospice.”
“I had to carry around spare pants and trousers all the time and at work it was a nightmare”
In 2008 I went to see a nurse at my local health centre because I was experiencing frequent visits to the toilet to wee and often I couldn’t hold on long enough to make it to the toilet. I had to carry around spare pants and trousers all the time and at work it was a nightmare. After the consultation with the nurse she referred me to the Middleton Centre to see a specialist nurse.
The specialist nurse at the Middleton Centre tried me on 3 different kinds of medications and when none of these worked she referred me to the Leeds Infirmary under the care of Dr Rogerson.
Dr Rogerson suggested I try Botox in my bladder which should help stop my bladder muscle contract. This involved inserting a 7” needle into my bladder whilst I was asleep. Unfortunately this procedure didn’t work for me so I was then referred to the St Jame’s Hospital under the care of Mr Harris.
Mr Harris put me on a sacral nerve stimulation trial which is a small device, similar to a pacemaker, which is surgically implanted just beneath the skin in the upper buttock. He also suggested I try bladder training, but neither of these helped my condition.
Eventually in July 2014 after a Cystoscopy, which is a procedure that involves a thin tube that has a light and a camera at one end being inserted into the urethra and moved up into the bladder, it was discovered that I had a smaller bladder than normal hence the frequent trips to the bathroom.
I went into hospital for a Clam Ileocystoplasty which is a procedure that involves the bladder being enlarged by joining a piece of my bowel to it. The operation took 4 and half hours and when I awoke I had many tubes and needles in me. I was in hospital 10 days altogether and it took about 3 months before I felt anything like my old self, but the main thing was the procedure was a success.
I am now able to go 4/5 hours between visits to the toilet and am able to go out without worrying where the next toilet is. I do have to self-catheterise because a residue of urine is left behind and it could cause an infection if not expelled, but the low dose maintenance antibiotic tablet that I am on is keeping infections at bay.
Life has finally turned a corner following the Neuromodulation procedure.
In 2009 I was advised to have a hysterectomy. That was not an easy decision but after a great deal of advice and planning it went ahead. Six weeks was the estimated time off work, how naïve I was to worry about that?
From the first days of discharge from hospital after that operation, I suffered from recurring infections of bladder and sometimes kidney. The consultant gynaecologist even visited me at home due to the severity of the first infections post-surgery. After a long delay of misdiagnoses, in February 2010 it was confirmed that I had an obstructed ureter.
After a depressing urodynamic testing session it was realised that considerable reflux from bladder to kidney was causing a lot of pain, infection and sometimes sepsis. The bladder itself had no sensation at all, so no “fullness” & “no urge” and emptying is a muscle push. All this I sort of knew but the urodynamics proved it somewhat dramatically. “Empty when you feel its full” I was instructed errr….well it never did feel full!
Tipped upside down and all around strapped to the radiology table still produced no “full” feeling. The wonderful urology nurse taught me the ISC procedures, mopped my tears, replaced my dark sunglasses (very handy for such times) and made me laugh handing me my new purple handbag a discrete Lofric logo on the side. “No one will ever know she said!” Clambering on the crowded train home I could not find a seat & sniffling I sat on the floor dropping the purple handbag. Out fell the whole lot…no one seemed to notice or care except me. The first night, that was a struggle – I thought I would never get the hang of it? Of course in the end it just seemed to be easy and routine. So, self-catheterisation whilst on the one hand appearing to increase the likelihood of infection, was necessary for the proper emptying of my bladder, but also was helpful when the infection pain was too bad to empty my bladder properly. I started by catheterising more or less four hourly. Residuals were about 100 – 200 mls. In addition I undertook every step to be proactive in ensuring infection sources were reduced. Not only on advice of the urology team but also by regular contact with the support group for Lofric catheters, attendance at their training sessions and my specialist bladder/bowel physiotherapist in Bedford. Gentamicin instillations are a temporary and excellent relief.
Having to self-catheterise during working hours became a huge burden. With no properly aseptic facilities I tried to avoid catheterising at work or indeed any public place at all. That was really not a good strategy for infection, bladder and kidney health. Travelling abroad became a slow-motion nightmare, catheters going through airport security always caused an embarrassing questioning session, and on flights the packaging seemed to swell making it nigh impossible to open in the cramped conditions of the aeroplane toilets. Not sure how aseptic they were either!
In 2013 I was delighted when it was suggested I have a trial of a neuromodulator. After a few delays due to increasing issues of back pain the trial began. Leads in and box on waist, took a fair bit of doing. It wasn’t pleasant I have to say. But Mr Medtronic and my own urological surgeon got there in the end. Anyhow off I went home, somewhat cynical. How on earth could a bit of battery, some wiring and a sort of tens machine possibly make my bladder empty better? To my total amazement when I actually measured the residuals they were down to 50mls or even less in the daytime. Mornings are still a bit up, but I didn’t believe it, my bladder was actually emptying. Unbelievable.
Soon after the trial Mr Medtronic, my urological surgeons and much anaesthetic got the full working model in.
So where are we now? Well bladder wise, no catheters in the daytime, just first thing and last thing to be sure. Work toilets now an acceptable option. Airports a rather celebrity status. On the advice of wonderful Medtronic nurse I show my special card and explain I have a pacemaker. I am ushered through like a celebrity. The device itself I hardly even remember I have it on. Finally life has turned a corner.
Suffering with bladder problems from an early age, Chloe thought it was something that she was just going to have to put up with for the rest of her life.
My main problems began when I was 3 yrs old when I would experience pain when urinating. Following investigations that showed nothing was abnormal, not many treatment options where offered to me. This problem continued almost weekly throughout my life up to adolescence, where I would repeatedly get prescribed antibiotics for UTIs and take medication to relieve the symptoms of Cystitis.
When I was 18 I changed GP surgeries and my new GP referred me to an Urologist, after several appointments for antibiotics. I was given a cystoscopy but this also came back as nothing abnormal detected, apart from the fact I have a bladder capacity of approximately 1000mls+. My symptoms did clear up for a period of time following this procedure, but unfortunately I then began to suffer from urinary retention. I was only able to go for a wee twice a day which began to re-exaggerate the painful urination I had previously suffered from.
I was then referred to an urodynamics clinic to see a specialist in 2014 who confirmed further, that I had an overly large bladder that was not fully emptying- which was why I was getting recurrent UTI/cystitis.
After this Urodynamics clinic I was advised to begin self-catheterisation to help my bladder to empty. I would go to the loo normally in an evening, and then catheterise in order to ensure my bladder was fully emptied at least once a day.
I found this surprisingly easy, and have been doing this for several months now. I have had none of my previous symptoms and find myself able to pass urine much more frequently without catheterisation. Self-catheterisation completely changed my life, and without the care of Mr Jain and Mr Harris of the Leeds Teaching Hospital Trust I would most likely be in the same predicament.
Not having to live with experiencing painful urination or being unable to pass urine has enabled me to feel much more normal as a person. Prior to this I used to worry about passing urine, for fear of pain occurring and tried to hide it when I was in pain and not discuss my inability to pass urine throughout the day. I wrongly believed that this problem was something I would just have to live with and was not aware that there are treatments available. Granted, the treatments won’t work for everyone, but they did work for me and they are worth trying.
I feel that there is a gap in support available for people who suffer from urinary retention, and the focus is perhaps more upon increased urinary frequency. I feel completely comfortable talking about my own self catheterisation and have found that people are very understanding. I am now coming to a point with my urological health where I can consider not catheterising as frequently, pain when urinating is non-existent and cystitis/UTIs are practically a distant memory.
Belinda has experienced bladder problems since childhood with no definative answer as to the cause. As Belinda says “its a work in progress” but this hasn’t stopped her from enjoying life and inspiring others with her personal story.
I started out with childhood enuresis where I was wetting the bed during the night which eventually stopped naturally. Then came the childhood bladder infections, courses of antibiotics and trips to the hospital still early on in my life. I remember as a child, pushing inwards with my hands on the bladder area in order to try and push out my urine. This is because my bladder muscle simply does not empty out the urine from the bladder as it should.
In 1981, aged 11 years old, I had an open re-implantation of the left ureter due to the ureter hooking itself in a bad position causing a risk to my kidneys. As a young girl I took it all in my stride, with a lot of support from my Mother.
During my life, I have had many urinary tract infections and courses of antibiotics to treat the UTIs. The discomfort and pain of UTIs affects one’s life in a huge way, and so does taking medication regularly because of the possible side effects medicines can produce. I have heard a few medical terms being referred to whilst describing my diagnosis, namely an ‘atonic bladder’, or a ‘hypo contractile bladder’ and also ‘Fowler’s Syndrome’.
I have no sensation in my bladder telling me it is time to go to the toilet until it is very, very full of urine. By that stage, it is far too full, and when the urine has previously been measured, it has shown to have a very high volume in millilitres (ml). It has shown that I am holding 800mls of urine in my bladder. The danger of this is that the urine can travel back up the ureter towards the kidneys, which can cause kidney damage.
Over the years, I have had many urology tests. I’ve had a Cystoscopy where a flexible cystoscope was ed into my urethra, which examined the inside of my bladder. Admittedly beforehand I felt quite scared, but the procedure wasn’t as bad as I had imagined. I’ve had a video Urodynamics test which shows what happens with the pressure and flow in my bladder and urethra when it is filling and emptying. During this procedure my bladder was first emptied completely and then re-filled and measured using ultrasound imaging. After that I had to sit on a special toilet that measured the pressure and amount of urine passed out. My bladder was then scanned again using the ultrasound scan to measure how much urine was left behind after going to the toilet. My scan showed that a lot of urine was still left behind and I did feel disappointed.
The urethral pressure profile test (UPP) that I had done was not a painful procedure. In fact I can honestly say that I haven’t experienced any pain with any of the tests that I have had. They are just nerve wracking, but all hospital staff have been so nice and reassuring which really does help.
In subsequent years, I also had urethral dilatation surgery. This surgery is where the urethra or the urethral opening is stretched because it’s too narrow to allow a good urine stream. In 2010, I had another urethral dilatation operation, and many more since then but none helped the problem of my inability to empty my bladder.
In February 2011, I was trained at a Hospital in the Urology Department to self-catheterise. I was really terrified in the lead up to this appointment, but I overcame this challenge, and I have overcome other challenges associated with self-catheterising ever since. It can have a psychological impact on one’s self-esteem (which it did for me). But I have found that the best approach is to keep on living as you were before you were reliant on catheters. The risk otherwise is that you stay at home much more, and start to decline invitations to go out because of the need to self-catheterise. It does take a bit longer in the toilet than the average person would spend in there, but it is no huge problem.
In 2013 I had sacral nerve stimulation surgery (SNS) in an attempt to improve my inability to empty my bladder (urine retention). But unfortunately for me, there was no change at all with SNS. The SNS surgery intends to re-establish the nerve communication between the brain and the bladder. I was disappointed that it did not work for me, but I am very glad that I tried the surgery to see if it could help, otherwise I would have never known.
In Winter 2014, I managed to travel on a long-haul flight from London Heathrow to Sydney there and back achieving my greatest goal to date! I have proved to myself that getting through both extremely long flights self-catheterising on-board can be done.
I now self-catheterise up to seven times per day, every day, and I will do this for the rest of my life. I don’t get woken up during the night by a full bladder, so my sleep is un-interrupted. My bladder is always very full in the morning, so as soon as I awake I empty my bladder immediately. Because urine that spends its time in the bladder for six or more hours gets stagnant and poses a risk of a UTI. After six hours, bacteria in the bladder can multiply at a much faster rate than normal, therefore the risk of contracting a urinary tract infection is much higher. Throughout my day I drink plenty of fluids, and I self-catheterise every three to four hours to keep the UTIs at away! This has kept my bladder very healthy which has improved the quality of my life. I have just had foot surgery, and I can still manage to self-catheterise as normal. Every challenge adds to my confidence of living life with catheters
I am due to have an MRI scan on my spine in July 2014 to see if there is anything there that shows why I cannot empty my bladder myself on my own. Therefore, it is work in progress, and the research is ongoing.
Brenda’s overactive bladder was interferring with her lecturing responsibilities, but after receiving a new treatment in 2010 she now feels like a new woman.
I was always looking for loos and wore a sanitary towel for protection. I would go and then ten minutes later needed to go again. The problem got worse in my forties just when I was starting a new lecturing job in Glasgow. It was so embarrassing.
To make matters worse I had to get up several times a night to go to the bathroom, which meant I was permanently tired. I was carrying out research in the rehabilitation of stroke patients and visiting them in their homes in and around Glasgow. I often had to break my journey to go to the loo and became very familiar with the toilets in restaurants, cafes, supermarkets and department stores.
I went to see my GP who referred me to a urogynaecologist. He told me I had an overactive bladder and I was sent for bladder training. I had to try not to go to the loo for an hour but for someone like me who had to go at least four times an hour this was impossible. One of my lowest moments was thinking that nothing could be done to help me and this was how I was going to be for the rest of my life.
My husband suggested I seek a second opinion and I was referred to Mr Graeme Conn. He discovered that not only did I have an over-active bladder it was also not emptying properly.
It was a relief to hear it wasn’t my fault and to know there was something wrong. Mr Conn recommended self-catheterisation. I didn’t like the sound of it but knew I had to do something. Thanks to instructions from a fantastic nurse I found it to be no bother.
However, I still experienced some bad days where I had to rush out of lectures to find a loo, so when I had the chance to participate in a three-week trial of external sacral nerve stimulation I readily agreed. Whenever I went to the toilet I had to measure my urine and record this in a diary. I felt the device had really helped but was told my results weren’t conclusive enough for me to have the device implanted. I was bitterly disappointed because I thought at last here was something that could help.
The next spring I took part in a second trial and this time the results were conclusive and so in May 2010 I had the device implanted. For the following three weeks it was tried on different settings to find the one most suitable for me. Most of the time I forget it’s there. It’s a marvellous device and no-one knows you’ve got it.
I’m a new woman now. I only get up once a night and have nights where I sleep straight through. I no longer need to self-catheterise.
My husband is delighted he doesn’t have to keep a look out for the nearest toilet any more and I can stay in front of my students for the duration of my lectures.
Suffering from continuous bouts of severe diarrhoea had a huge effect on my everyday life
Following the birth of her youngest son, and as a result of anal sphincter damage, Tracy experienced regular bouts of diarrhoea which severely impacted her daily life.
Tracy is 47 and lives in Birmingham. She works for her local council as a family support worker and is married with three sons, aged 14, 19 and 22.
Following the birth of her youngest son, and as a result of anal sphincter damage, Tracy experienced regular bouts of diarrhoea which severely impacted her daily life. Thanks to her consultant Tracy was offered an innovative treatment called Interstim (sacral nerve stimulation) which totally transformed her life.
When I was pregnant with my youngest son Lewis I suffered from diarrhoea. This continued after Lewis was born and so I was referred to Mr Mark Chapman, a bowel specialist at my local hospital, Good Hope in Sutton Coldfield. When I described the amount of fluid I was losing to Mr Chapman he was astounded. He explained that the cause of my diarrhoea was anal sphincter damage and discussed treatments options with me. He wasn’t convinced that fitting a conventional stoma would be the best option for me and so transferred me to another hospital, The Queen Elizabeth in Birmingham, which offered the innovative nerve stimulation treatment, Interstim.
I was fitted with a temporary Interstim for two weeks to see how my body responded to the device. The procedure proved a success, my condition improved tremendously and I was put onto a waiting list to have the full device fitted at the Queen Elizabeth hospital.
Several months later whilst I was on the waiting list, my family bumped into Mr Chapman by chance in a local park. They told Mr Chapman that I had not had the full Interstim treatment fitted and he was able to let them know that his hospital, Good Hope in Sutton Coldfield, now performed the procedure.
I didn’t feel nervous about having the full device implanted, the operation went very well and I was back at home the following afternoon. Two weeks after the operation I felt well and went to have the Intersim programmed. Now, two years on, I haven’t looked back.
Suffering from continuous bouts of severe diarrhoea had a huge effect on my everyday life. Unless I knew where the nearest toilet would be, I was extremely panicky and uncomfortable every time I left the house. There were many times when I needed to just drop everything and run to the nearest bathroom. Basic decisions, like what to wear, were also affected by my condition. I gave up wearing nice underwear and would only ever go out in black trousers. I was unable to enjoy a cup of coffee or eat any foods that might stimulate my bowels, like wholegrain cereals or brown bread. Travel was difficult too. I rarely took long car journeys and started taking the bus to work to avoid the fifteen minute walk. Even taking a holiday was stressful. My husband and I booked a holiday with friends at a cottage in Ireland, although for me the holiday became very difficult as I was conscious the cottage only had one bathroom. The embarrassment I felt because I was constantly dashing to the toilet and the paranoia I had about the smell had a profound effect on my confidence.
The care I received from Mr Chapman and my nurse Amanda Mellon has been fantastic. I would never, never want the device removed as it has totally transformed my life.
Jemima suffered with bowel control problems for more than 34 years and had almost given up hope of finding a solution. In 2004 she was finally referred to a consultant who recommended a new treatment that changed her life forever.
“I was in a charity shop in Bolton 34 years ago when I first realised I had a bowel control problem. I asked if I could use their loo but they said no and the next thing I knew everything had come away from me right there in the shop. I went to see my GP who said it might have been something I’d eaten and gave me some tablets. The tablets made something of a difference but I would still suffer with accidents on occasion.
I was working as a sales rep during the day and pursuing my passion for singing by performing in clubs at night, so you can imagine, I was terrified of soiling myself, particularly as there were times when I didn’t realise I was doing it.
Life went on however and I was overjoyed to be offered a singing job in Marbella and I hoped the tablets would keep my problem under control. But my bowel incontinence returned and after eight months I daren’t go on stage in case I had an accident.
I had numerous examinations at a private clinic but no-one could tell me what was wrong. When I moved to Gran Canaria I saw a host of specialists, one even suggested it could be malaria or cancer.
In Gran Canaria I met my late husband Roland. He was working for the same time-share company as me. At first I refused to go out with him because of my incontinence. But he didn’t take no for an answer and I had to explain. Roland was amazing he wasn’t embarrassed or disgusted as I thought he would be and was very understanding.
I never went anywhere without wearing large incontinence pads and carrying a big bag of spare trousers, panties and pads. If we did go out I would sit as close as possible to the toilet and carry a card saying ‘I can’t wait’.
When Roland died in 2004 I came home and underwent repeated tests as I was literally at my wits end. Eventually I was referred to a specialist at Wythenshawe Hospital in Manchester and he was the first to tell me the cause of my problem – little muscle action in my bowel.
By now I was so frightened of messing myself I didn’t go out. Even at home watching TV I sat on a commode because I was afraid I wouldn’t get to the loo in time.
Two years ago a miracle happened. I had surgery to implant a device called InterStim that stimulates my sacral nerves and lets me know when I need to go. Now I can go anywhere and eat anything as I’m finally free to enjoy time away from my home without having to worry about where the nearest toilet is.
People with a problem like mine shouldn’t be embarrassed to talk about it and should seek a specialist who can discuss the most up-to-date treatment available.”
To find out more about the treatments mentioned in Jemima’s story please visit our Sacral Nerve Stimulation page.
Emma who is 24 years old recounts a childhood beset by countless trips to the loo until she was diagnosed with OAB in 2009 and then finally received Botox treatment.
“I first remember going to the doctors about my bladder problems when I was seven. My Mum was fed up of me going to the loo and then a few seconds later demanding to go again. We were told it was nothing to worry about and I would grow out of it, but I didn’t.
I went to the loo around 20 times a day and got up three times at night. It disrupted everything in my life – my sleep, schoolwork and friendships. At senior school we weren’t allowed to go to the toilet during class and I was reduced to tears many times because I was literally bursting for the toilet. When the lesson ended I would run as fast as I could to the loo. If I was out with my friends I would leave them every five minutes to go. On one occasion there was the inevitable queue for the ladies so I had to pretend I was going to be sick so I could be next otherwise I would have probably wet myself.
In 2008 I spent four months with Camp America working as a special needs counsellor. The first few weeks my bladder problem got worse. I thought I had an infection and drank lots of cranberry juice which made matters worse. On my return I insisted my doctor refer me to a urologist. After scanning my bladder and having a urodynamics test I was finally told I had a very overactive bladder. I simply burst into tears with relief. It wasn’t all in my mind after all and now there was a possibility I would get some help.
I was put on Solifenacin, which is a drug used to reduce the frequency of passing urine, but it made little difference which was a huge disappointment as I was back to square one. Then one day, I came across a leaflet which claimed that Botox may help ease bladder problems. So desperate for a solution to my bladder issues, I went back to my urologist to discuss it and thankfully he agreed that we should give it go. Before having the treatment I had to see a specialist nurse who taught me to self-catheterise in case the procedure caused me to retain urine as this can sometimes happen.
In February 2010, under a general anaesthetic, I had my first treatment. It was amazing and has improved my quality of life dramatically. Instead of getting up three times a night I only had to get up once. Botox gives me five good months, then I start to notice a difference and by the seventh month I’m ready for another treatment.
Thanks to this treatment I was able to go to university and now have a great job. Without it there is no way I would have been able to sit and concentrate for an hour without interruption.
I think I should have been offered treatment much earlier because OAB has really interfered with my studies. Young people with this condition need to put their foot down when they see their GP and ask to be referred to a urologist, because there are simple and effective options out there. Doctors should remember it is not only older women who have urinary incontinence.”
To find out more about the treatment mentioned in Emma’s story, please visit our Botulinum Toxin page.
Don’t be on your own with something like this, find someone you can talk to Adam, a former Royal Dragoon Guard was seriously injured in the Iraq war leaving him both bladder and bowel incontinent.
Adam, a former Royal Dragoon Guard was seriously injured in the Iraq war leaving him both bladder and bowel incontinent.
“Everything down below was working well until I was 36. Then at the outbreak of the Iraq war I was called up. Within 19 days I was in an exchange of fire with the Iraqi army on the outskirts of Basra and thrown to the ground by an anti-tank warhead.
At first I didn’t realise I’d been hit as the shock of impact covered the extent of my injuries. Later I learnt my radio pack and body armour had saved my life.
In a Kuwaiti field hospital some hours later, a doctor noticed my clothes were in shreds and that I had burns on my neck and arms. An X-ray revealed two spinal fractures and so I was immediately immobilised. Back in the UK, I spent the next nine months undergoing intensive surgery on my spine.
To begin with I retained urine and faeces and had to be catheterised. Because of all the surgery, I didn’t notice I’d lost any sensation of knowing when I wanted to go to the toilet. This was due to significant injuries to my nerve tissue.
I used an irrigation system to help control my bowel incontinence and Botox injections for my bladder incontinence. The Botox made me retain urine, which can happen in some cases, so I was taught to self-catheterise. After a couple of years my urologist became concerned about the amount of Botox I was having and suggested I try a new implanted device to stimulate my sacral nerves.
In order to prepare my body for the implant and surgery, I had to come off the Botox and let everything get back to its very worst state. Then for three weeks I used an external device to see if the implant would work for me. For the very first time in years I could sense twitching at the bottom of my spinal cord.
I then had a bilateral device implanted. This let me know when I wanted to pass a motion or urinate. It’s simply fantastic. Although I don’t have total control, the majority of the time it allows me to find a toilet. I still wear a sheath catheter in case I cough or sneeze but usually I go to the loo in the normal manner like I used to.
I don’t have to wear pads during the day any more although I still use them at night in case a sudden movement in bed causes me to leak. Sometimes the implant settings need adjusting and the batteries have to be replaced every five years, but this doesn’t involve major surgery.
Everyone takes going to the loo for granted. They don’t realise incontinence changes your life around and it doesn’t help that adult incontinence remains such a taboo subject. Even some GPs have frowned at me when I’ve turned up with nappy rash or an infection around my bottom and asked for a prescription.
There have been times when I have got very low, but I’ve got through thanks to the support of my family and also by talking to others with similar problems. Don’t be on your own with something like this. Find someone you can talk to.”
* Adam is the chairman and founder of The Forgotten Heroes, a charity set up to support the carers of the thousands of injured servicemen and women in the UK.
To find out about the treatments mentioned on this page, please visit our Bladder Treatment section.
Botox cured my overactive bladder… How an innovative treatment solved one woman’s toilet troubles
Emma Henderson who has experienced OAB since she was a child tells her story in the Mirror newspaper.
If you would like to read the article please visit the Mirror website.